Sewing, drawing, thinking and writing about life with Ehler's Danlos Syndrome

Category Archives: Sorrow

If my husband were writing this, he’d likely say that my sudden descent into fury and then hysterical, ugly sobbing for over an hour last night came right out of the blue. Except that careful examination of events leading up to that suggest that there were many warning signs that might have been noted in order to batten down the hatches in time. I am past the point in my life where my behavior is something that happens in a vacuum and is related to the inscrutable whims of having ovaries.

Most of my life my emotional tactics have been polarized by being in the shadow of a person whose voice needed to the the loudest in the room, whose needs had to be greater than anyone else. The tacit agreement that this person deserved all the space/love/attention was that which forced me into a corner with my own emotions. I’m tightly lidded, and sometimes even I am not reading my inner barometric pressure very effectively. It’s my job to be fine. Always. It’s my job to be rational. Always. I am never sure what the right balance is, so I tend to fail to release some steam in time to avoid a complete breakdown. Sometimes I’m not in touch with my feelings enough to know that I need to bleed a little air from the lines before something blows.

Second only to having a rare, incurable condition that includes chronic pain and a host of other oddities is the isolation and loneliness that come with it. It’s not as if someone comes across to find me bleeding from the head or with a visibly broken bone that demands action. People really only know if I am in pain if I tell them. It’s not my style to report my pain to people constantly, and I don’t want to become the sort of drag that can only talk about themselves more and more loudly to gain attention. I compensate well enough to fool even myself sometimes.

From Sunday night until Tuesday night I woke at about 1:30 or 2:00 am, with significant pain but also a racing heart and scattered, unsettled mind. I lay awake until 4:00 am each time, trying not to freak out. Tuesday night I planned for it. I drank less in case that was the issue. I took a bath to relax (instead it put my heart rate at 119, but I tried) I went to bed early. I set my mind up with things to think about should I wake up, and reminders about relaxation. I woke up at 1:30 am feeling both angry and unable to focus or settle my brain. My shoulder was terribly painful so I iced it, and whiled away the anxious hours until I fell briefly back to sleep at 4:00 am.

Once I got up, I Dr Google’d the beta blocker I’m on–Propanolol. Surprise, it can cause wakefulness and disturbed sleep particularly in the wee hours. Believing my PCP to be away on vacation, I finally decided to text him anyway around 10:00 am. I said to my husband at lunch time that I didn’t really think I could be asked to deal with all of this (pain, sleeplessness, lack of professional medical support). I caught the edge of tears in my voice and stuffed that back away. Part of me might have hoped that my spouse would immediately take me in his arms and reassure me, but that part of me is an immature girl who wants her mind read. Or, what it really is–I need someone else to bridge the gap between the growing emotional tension and the place where I can let some of it out constructively. When they don’t hear that unspoken request, I feel abandoned and angry.

I waited all day to hear from my PCP. I finally did, at a little after 5:00 pm. He’s not away on vacation after all (the only excuse I would find acceptable for not getting back to me). He told me to taper the Propanolol. I had to query then as to how much? How long? A series of texts trying to elicit information from him. And then at the end of that conversation he texted, “I have another EDS patient who is doing well on Cymbalta. Have we tried that?”

If you wish to go back through my archives you can see that last July/August, we tried Cymbalta not once, but twice, and my reaction to it skirted the edge of “needs to be hospitalized”. On the surface, maybe, this is just a boo-boo on his part. To me, it felt like a ton of bricks. First, it would help if my PCP remembered my history, especially the parts that required constant texting for two or more days to make sure I got through the reaction. Second, I felt shamed; he has another EDS patient who is apparently easier to work with and gives him the satisfaction of helping. Third, I was alarmed that he thinks he’s good enough at this to manage another EDSer, because I generally feel like he would give anything to pass me on to someone more competent.

I texted back, “Twice. Serotonin reaction both times.” I never heard back. I actually went back to my archives, too, to make sure that my recollection was correct–once again allowing a medical professional to cause me to question myself and what I know. My husband even said, “That’s what he tried on you last year that was so bad?” At that point I was already imploding and missed that he was with me on this and might have my back. I was aware of feeling angry and tired and pain. I did not take a full inventory to see that my internal pressure was approaching the red line.

I’m giving up massage, the one thing that I could hang my hat on as working and helpful. My shrink is retiring in September. My pain has ratcheted up significantly. I’m again having a drug reaction that crosses yet another item off the list and leaves a significant problem unsolved. I haven’t slept well in awhile. I don’t have adequate medical care or support. I’m going back to work soon, when I will not have the ability to sit around all morning because I stayed up crying half the night. I have lost some of the support I used to get from my mother, because a mentally ill family member is too close for her to not to lose her focus and boundaries. There are NO solutions for any of my most pressing problems.

So the fact that I then went on to very much overreact to a perceived slight on the part of my spouse and go on a rampage of shouting that ended with him leaving the room while I sobbed and ugly cried is somehow not so surprising as it seemed last night. I can see that I made myself unlovable even as I demanded it from him, and was somehow thorny while wanting him to be willing to hold that thorniness close to him and be tender with it. I can see that there is no way I can be neat and surgical about my emotional state and subsequent falling apart. I completely lost my balance last night, and I feel pretty wobbly yet today. I’m not sorry for the sobbing because I needed to release it. I’m sorry I wasn’t able to let any of it out before it reached the atomic level. I don’t know how to have a well-timed, scheduled breakdown, nor should I be so constrained, but for my own sake I need to stay a little more in touch with my internal state.

Which is difficult when so many things are just not working for me right now. I’m probably not done crying.

I was asked to make a Day of the Dead-themed Victorian walking suit for a show that will spend two years traveling to various museums. For the first time in my artistic life, I have not only failed to submit my piece early, I have missed the initial deadlines. Inspiration showed up late in this case, but I think it was worth it. Initially I made a Victorian-esque skirt from some of my extensive collection of Our Lady of Guadalupe fabrics. Then it all ground to halt. Digging around in a cedar chest filled with -Ray’s things for a class I was teaching on the topic of DIY-clothing (upcycling, transforming, etc) I found a jacket that I had made for her from two vintage blouses that featured an appliqued skull on the back.

In looking at that, and some other things I had made for her, I realized I was ready to let these things out of the silent tomb of the cedar chest. I wanted to transform them, then release the back into the world. I took the tshirt she sent me with the logo of their band, which I designed, and cut the logo out, hand colored it, and hand appliqued it onto the skull jacket:

Then I appliqued elements from a gorgeous quilter cotton that was full of Mexican folk symbols (and some skull fabric leftover from my purse-making days) as well as drawing root elements by hand with alcohol-based markers and a Tee Juice marker.

Next, I drew in a cat skull with bony wing elements and painted them gold.

Then I decided that everything needed embroidery. Everything.

Next came the bustle. I used as the bottom layer a capelet I had made for -Ray from a vintage apron, that included hand made flowers and a portrait I drew of her sewn into the pocket. Over that are layers of a vintage linen with crocheted corners, and the top layer is a rotten Victorian collar. For height I made two sort of bum rolls out of related fabrics. Then I drew, appliqued, embroidered and painted everything.

I will save the rest of the photos for a second post.

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Since that’s not enough to do, I am also volunteering as the Costume Designer for a production of Chicago that a good friend and co-worker is co-directing. The concept is that the show is being put on by a group of convicts in a modern-day women’s prison (shades of OITNB). Thus, they are all dressed in gray prison clothing which the actors have to try to make look sexy without a lot of options to remake things. If you doubt this possibility, think back to being in high school and shortening your skirt by rolling the waistband after you went to school, or tying your shirt so that some midriff showed. It’s working quite well. Also, though, a lot of their costume elements need to look like they made them from a limited amount of available materials, so I have now gotten very good at making fedoras and boaters that look like they are made from food wrappers and boxes:

There’s also a derby hat covered in Dum-Dum wrappers for Amos as well as a bow tie and lapel flower of the same. The third boater, not pictured, is a Cheese-Its theme.

We go into Tech this week, and then, possibly, I will reclaim my summer break and actually get to relax and enjoy some of it.

I am having a hard time with having lost Boris (our small Mexican dog with the big Eastern European name) and doubting my choice to let him go. Not in any rational sense; on paper, logically, I know I did the right thing. But in my heart, I feel sorry and sad. I hope he understands; but maybe not–I’d love a world where animals had the same treatment as people, but would I love that because no one would get euthanized for having run out of quality time, or because people wouldn’t have to suffer for so long, either?

I just know that I really, really miss that little guy, and I am responsible for his absence.

———–

The trip to Chicago was really emotionally hard, and the key piece of that was understanding that I can’t depend on my spouse to advocate effectively for me when he is in his place of origin. On one level, I get it–he reverts to his kid role, he’s overwhelmed, they are extremely difficult. On the other hand, I’m angry and disappointed. I really am on my own, and since that is true, I will never go back with him to visit them unless something is really wrong on a deathbed sort of level. I can’t put myself through that. If they come here, as they have threatened, I will go out of town. I’ve given a lot to them over the years, and they’ve taken a lot more than they’ve given back, and their son can’t set good boundaries with them. So, I will have to set boundaries to take care of myself.

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Long after I am gone, I am sure medical science and genetics will evolve to determine how mental illness–or at least the propensity for it–is passed down. Borderline personality disorder runs in my family, and while I am sure the process is somewhat akin to alchemy more than straight genetics, it means that right now there are two Borderlines running about– each from a different generation. That’s just my mom’s side, too–there’s also depression, anxiety, alcoholism, sociopaths, suicide, self injury and drug problems coming from both sides. The question maybe is how do any of us make it out alive? When you know that someone is ill, and you’ve proven to yourself that you cannot help them, you have to detach and protect yourself. Sure, their behavior isn’t personal, it’s pathology, and yes, they are in tremendous pain, but that doesn’t mean you should allow them to hurt you. The moat is in place, the drawbridge is up. All signs say, “Go away.”

You’ve reached the boundary, you’ll need to turn back.

———–

One of my tenants called me today, in tears. One of the roommates’ mother had committed suicide last night. Walked out of the room from an argument with her kids and killed herself. The tenant who called me kept saying she was sorry for burdening me and I told her she wasn’t, I care about her, it’s a horrible thing. I reminded her to take care of herself so that she can keep on being a good friend to her roommate. I told her that her grief is valid, and doesn’t need to be measured against the roommate’s. Gosh, there’s enough grief to go around, really–you won’t run out, or take someone else’s, go ahead and grieve. I suggested that she not judge anyone for how they act right now; grief does strange things to a person, and suicide is like knowing an asteroid is coming to vaporize you–maybe then it might seem rational to ask about how much the house is worth or what should be done with the cars–those are solvable problems, whereas the asteroid is just this terrible thing hovering above your head. Maybe it’s not possible to look right at it; at least not at first. I told her we’d cover the rent if it was late, not to worry.

I revisited, for a moment, Ray and Ruby and John. But then I let them go back to their places. You never get over it, I told my tenant, but you learn to live with it. It takes a long, long time.

————–

The theme is who do I have to take care of, and how much? I have to take care of myself. I have to take care of my child. For ten minutes on the phone I can take care of my tenant. I do not have to take care of people whose mental illness could cause them to harm me. I do not have to take care of people who have no space in their lives for me. I do not have to take care of people who aren’t doing their work.

The shrink said that when we’re about to refine something, or pass to another level of understanding, just before we get there it feels like the walls are closing in, and the problem is everywhere. All around me demands are being made for my attention and energy. People want me to put them ahead of myself. So each time I say no, I’m moving forward. No, you cannot come to my house and ring my doorbell a million times and pound on the door. No, I won’t go on a trip where I will be lonely and ignored and pushed beyond my limits. No, I will not act as a buffer for you to avoid your family.

She also suggested that I probably need a really good cry. This is also true, but a far more elusive beast.

We have returned from a trip to the Chicago-land area to visit the in-laws. As it always ends up, it was challenging.

The Thursday before we were to leave, I took a very old, very sick dog to the vet for the last time. I had been up all night with him, setting me up for going on “vacation” (and I use the term very loosely) exhausted. It’s never easy to decide to euthanize a dog, and I don’t judge others whom I know love their pets dearly, as do I. We do the best we can.

I had only just returned from the vet, and the child and I were weeping in the hallway (without hugging, since I had dog poop all over me) when my doorbell started ringing over and over again. A peek outside confirmed it was someone with whom I want no contact, and from whom I fear violence. Unlike a normal person, this one chose to ring the bell over and over and over again, pound on the door, ring the bell, etc, for around 15 minutes. The child and I retreated to the back of the house and called the police. They just missed our unwelcome guest, but will now be watching for her. I was so stressed that the responding officer took both my violently shaking hands in his and said, “I can tell you are really frightened. Take a deep breath.”

——

The next day should have been for resting and packing, but I had bought tickets to see Wicked in a nearby city for that night, the night before we would leave for Chicago. We went, but I couldn’t enjoy it as much as I’d have liked–I was too caught up in feeling like I wronged the dog, angry with the unwelcome visitor (who should know better), worried about packing and, oh, the fact that I find flying terrifying. I found that at each musical number, I was beset with an almost overwhelming urge to ugly-cry. We got home late, got up the next day, packed, and headed back to that same city’s airport to fly out.

We were fine from El Paso to Austin, where we circled and circled and due to storms were diverted to Dallas. We sat on the ground in Dallas for three hours, while our flight to Chicago left without us. We flew back to Austin. I had quickly booked a hotel online while we lingered on the tarmac, paying an outrageous sum of $200 for a near-to-the-airport La Quinta. By the time we arrived in Austin (Trapped in Texas, Chapter 1), the airport was all but shut down. They booked us on a morning flight that would go through Dallas once again.

La Quinta refused to accept our distressed passenger voucher because they are total dicks and I hope they are someday financially ruined. We stayed in a room with a shower so gross none of us were willing to use it. The bathroom door wasn’t a door, per se, but two cabinet type doors with shuttered vents (like closet doors) that couldn’t be locked and the knob fell off. The hotel was full to the brim of loud, shouting, running people all night. I had not packed any wine, so I spent the night dozing and hallucinating to the tune of six Benadryl, while also berating myself for my needs.

We made it from Dallas to Chicago, and went directly to the Huge Family Gathering that the in-laws had scheduled so we could “see everyone.” It was raining. They did not, therefore, move the party into their house, they moved it into their filthy garage, next to the truck they for whatever reason did not see fit to move to better accommodate their guests. The first thing my FIL said to my husband was not, “How are you?” or “You must be exhausted.” It was, patting stomach, “Getting a little bigger, huh?”

My MIL informed me in whispers that she hadn’t told my husband but she had developed a serious spinal condition (Spinal Stenosis) and had been unable to walk and might need surgery. This is par for the course. My FIL explained to me and the child that the reason it was raining here but California had a drought was because “the liberals” got rid of the smog, which used to hold the rain in California. The child is 13 and he was baffled by this amazing, magical bullshit. We met cousins with whom we had nothing in common. We talked to other people about themselves and no one asked me much about me (also par for the course). Oh, except for when my FIL told my husband’s cousin that she should have me make her wedding dress, and also that I make, “Crazy weird costumes with funny legs and stuff.”

Oh yes, I know that this is what the FIL considers “praising” but I am far too evolved to accept that being passive aggressive is anything other than what it is. Which makes it hard for me with them, since I won’t play pretend.

The evening goes on and on and on until I finally say, “I am too tired. I must go to bed.” Then I am stranded in the filthy, moldy basement because not only are there stairs, said stairs have a pretend railing that threatens to fall off should one use it. My husband realizes this belatedly.

There are stairs at my BIL’s house, which means I must carefully plan my ups and downs. There is also an atmosphere of suppressed rage that I am especially attuned to, and which my spouse can’t notice. It takes us forever to get our shit together the next day, sitting in the ‘burbs in the rain, and we finally meet up at a Dave and Busters. I drink. I can’t help but simply order two drinks per encounter with the parents-in-law. The child balks initially (look at all those KIDS, he says, in disgust) but then has fun. Then we all retire to the BIL’s to sit and stare at each other.

The BIL disappears to the basement to play video games with the child. The MIL asks how my hands are (it has been two years since diagnosis, they still can’t stick with a conversation long enough to find out what I have). I say they aren’t very good. I mention that since it’s genetic, I have to just try to pace myself. My FIL asks me if changing my diet would help. I say, very evenly, that this is a GENETIC disorder, meaning my GENES are flawed, and the GENE that is flawed is present in 90% of the body’s structures, so NO, it’s not an issue of changing my diet. He falls back to his climate change theory and then they spend 45 minutes giving us an intimate blow-by-blow of my MIL’s recent, very scary MRSA infection. The MIL can hardly tell her own story because the FIL is trying to talk over her. My silly story is left far behind.I go to bed at 8:00 pm, alone, which is how it always works there.

Everything we eat is gluten. I give up and accept that I will just take immodium every day and gain five pounds.

Day three it rains. The BIL takes the child to the movies and the husband and I go to a nearby suburb’s charming downtown, have an expensive lunch and a bottle of wine, wander about, then collect them. We later meet the in-laws for dinner at an Italian restaurant they like. I stick my FIL with buying my dinner and two glasses of wine. My MIL mentions that we aren’t staying for very long. I resist mentioning that it feels like a life sentence. We planned four full days–not our fault one was lost to travel, but that one still would’ve been spent sitting in their goddamned garage. I mention that guests, like fish, begin to smell after three days. She agrees gaily, entirely missing the point, which is that we are staying four and when they come out to see us, they never stay less than an entire week.

Day four we go into the city. The in-laws refuse to go with us, but resent that we aren’t, I guess, sitting in their living room. We take the train, and are planning to take a boat tour of downtown architecture. The BIL leads us on a forced march that despite claims of, “We’re almost there” is far, far too long and too fast and too many stairs for me. My husband weakly mentions maybe a cab but is overruled by the BIL.

I should have stopped. I should have insisted on a cab. I relied on my spouse who cannot function or be decisive around his family. So it’s my own fault that every step I go up now, my left knee snaps and then grinds.

The boat tour was fun. Then we faced another forced march through the city, where we couldn’t find anywhere to eat, where the husband couldn’t make a decision, and there were words in the business district. I was hangry, exhausted physically and emotionally, and as usual, he didn’t have my back.

Upon returning we declined meeting the inlaws for dinner, and I went to bed. Alone. Early.

We met the inlaws the next day for breakfast before our flight. They, predictably, chose a place that could be called “Breakfast in Anywhere, USA”. They aren’t gourmets. Any anecdote I related about things that interest me was met with a complete lack of understanding, being talked over by my FIL with his penguin laugh, or silence.

Soon, the husband and I will have a little post-mortem, and I will explain that this trip we just finished? It’s the last one I’m taking to Chicago.

Someone’s got to have my back, because it hurts right now, along with my hips, my knees, my ankles and my calves.

My spouse wants to buy a WWII-era Willys Jeep. I am angry about the Jeep. I could spend hours trying to figure out why. But I would still be angry.

So, I’m angry. I feel like I’ve been set up to be the person who is no fun. I feel jealous. I feel left behind. I feel set aside, unnoticed, left out. I feel afraid.

Afraid of a Jeep? Yes, apparently I am. I have listened to things like “stiff suspension” and “bouncing around the goat trails” and “fun” and I know those first two mean that the last isn’t happening for me. It is something he will do without me; and not because I don’t want to (which is the position I am outwardly holding) but because I don’t think I can, which is the part where I feel like crying instead of feeling angry and hateful.

I feel left behind. The next thought that seems to follow that is that I feel that way about our upcoming visit to see his parents in Chicago (the Chicago suburbs, I add, hastily, having learned there is a VAST difference—learned because “my parents live in Chicago and have a pool” conjured an entirely different scene than “they live in a suburb in a smelly house with a crappy above ground pool full of goose shit.”). We stay with his brother, who has stairs. I am deeply worried about the stairs, and also feeling exposed and vulnerable and on my own–which is how those visits ALWAYS feel to me, and that was before I was so affected by EDS.

That’s it, really. I feel alone, and like I am being left behind, and like I am not worth the trouble. I cannot sit in one position on the couch for very long without something starting to hurt; I won’t do well being bounced around in a Jeep. It’s like when we talk about how much we think the child would like snowboarding and I wonder what would I be doing? Sitting alone in a hotel room?

Before my Grama died my mother and I took her to California for a niece’s wedding. We went out shopping and Grama said she would be perfectly happy sitting in her hotel room while we did that and I still feel like crying when I think about that and how much I don’t want to be left behind. I don’t want to miss out. I don’t want to be excluded, or cast as no fun, or the problem.

The Jeep makes me feel like I am. The stairs make me feel like I am. Right now, my spouse makes me feel alone. Not out of spite, but out of not being in my shoes.

They say that ultimately, we are all alone.Pity it makes us so uncomfortable.

Sometimes I wake up feeling low. I’m not in any more pain than usual, but I feel like I am defeated anyway. My brain reminds me that I live with this level of pain all the time, and do okay with it, so what’s the deal today? I review, as I lay in bed,all the things that are good:

We had friends over (impromptu) last night and clicked with them (couple friends are SO hard to find, it’s a tricky dynamic). We did not stay up too late, we did not over-imbibe, I didn’t eat too much, my stomach didn’t demand my attention at 3:00 am (Not much. All it needed was a glass of cold water to put it to bed). I did not wake up with my internal judge saying, “I can’t believe you said/did that!”

I have the next three days off work, I will have time to draw and sew, I feel inspired creatively.

So, then, what gives? My brain; really, my ego, could spend hours trying to figure out why I feel down and also judging me for feeling down and criticizing me for being down, running back to the above and demanding why I would be so perverse as to dare to feel down after a nice night? What the hell is wrong with you, my inner judge demands.

I try sometimes to imagine if someone else were telling me this, and what I would say.

Your pain level doesn’t have to change for you to have a day where even though you’ve carried this load well for X amount of time, you don’t have a moment where you are tired and resentful of the burden. If someone pinched you everyday, even though you know that it will hurt for a moment and feel better, you’d still probably have days where you felt like if someone pinched you even one more damn time, you might lose your mind—or even feel sad knowing that you’re going to be pinched every single day and fearful that someone might start pinching you two or more times a day, but there won’t be a day with no pinching ever again.

The husband half of the new couple friends was interested in my gluten free status, and I said that I had tried it for joint pain, which hadn’t worked, but it did help my gut. This is my general very vague explanation. Later he asked me more about this joint pain, what was it, and I explained the whole EDS thing. His sister is an internist and rheumatologist who practices in a nearby (3 hours away) city, and sounds like a possible candidate to manage me. The wife half has a brother with an unusual genetic condition that the husband’s sister has helped with, so they are a bit familiar with my world. My ego is like, “DUDE, that is seriously good news, what the hell is wrong with you?”

The fact that maybe finding a doctor is good news doesn’t also mean that you can’t wish you didn’t need a doctor and that you didn’t have anything so unusual wrong with you and that you don’t want people to feel sorry for you even as you know of course they would, who would want their friend to have this crappy disorder? They probably don’t view you as an object of pity, they just want to help–but it’s okay to wish you didn’t need any help in the first place.

Also I hurt my thumb yesterday, doing something that I judge as being not a valid thing to hurt yourself doing. I was turning a piece of fabric that would be a tie on a dress, and the pinching and pulling action of doing that suddenly hurt like hell and made it feel like I’d torn my thumb out of the socket. Which, maybe I did, that can happen. It’s a small thing, though, and there are better ways to accomplish what I was doing so that it isn’t as painful but dammit, there is a lot riding on my hands not breaking down, even as I know they are.

Of course you are going to feel upset by being defeated by what seems like a small task–we know the big things we can’t do, but when we run into these tiny things it’s terribly frustrating and scary. Also, given that you can’t take anything for pain, *any* new pain feels a little bit like it’s just way too much to deal with. That’s perfectly understandable.

But, I do not have time for this feeling. I need to be steaming forward on my life, not sitting around feeling like crying over things I can’t do anything about. I’ve got stuff to do, and I want to do it. I haven’t got space in my life for moping.

Maybe you should take it easy on yourself. Let yourself feel how you are feeling. Crying isn’t the worst activity in the world, you know. Give yourself a break.

Up until now, I have structured my medical care concerning EDS this way:

1. No more Physical Therapy. It was unsuccessful, sometimes injurious, expensive and frustrating.

2. No narcotics.

3. I will not give up booze.

4. I will not take any hypnotic sleep aids like Ambien.

5. I cannot change my sleep routine.

6. No pain medication. NSAIDS no longer work, my stomach is a mess because of them, and I’m not willing to be stupid on some drug and lose productivity.

7. I have sought counseling for grief, dealing with a chronic, degenerative illness and I’m sticking with that.

8. I won’t take weird, high level drugs that interact with my nerves or scary shit like that.

My back has been getting really, really bad. My hip joined in. My jaw slipped out two-three times the other day. My right thumb is no longer useful for picking things up in certain grips. I went to the doctor. I was feeling like crying all the time, getting up in the morning groggy and ashamed of the mental inventory of how much it took to put me to sleep; a whole bottle of wine? Plus Xanax and Benadryl? Shit, did I take the emergency Ativan, too? What am I doing? Liver, I am sorry, I really am. By nighttime, switching over to the other side of my dual brain; wine is better than something that might make me get up and eat the refrigerator or buy a car or cut my throat, maybe it’s not the Xanax making me feel weirdly anxious in the morning and like crying all the time, maybe it’s just having EDS, maybe it’s not the Xanax making me feel unfocused and not hungry, besides, I’ve got to do something to sleep through this pain because I’m not taking pain meds.

We met yesterday to go over the results of an MRI of my lower back. I still have a bad back, degeneration at L4 and L5, bulging disc. I brought the Medical Resource Guide put out by EDNF.org. I was particularly undone by this sentence in the guide: “…poor mental health frequently results from enduring constant physiological failures.” Cheerful, that. My PCP went over the Pain Management Brochure in detail.

Under managing chronic events:

1. Analgesics. We both reject opioids and narcartics for now. He voted muscle relaxant and wrote a script for Baclofen. I said I was afraid I’d be groggy. He asked me how much time I was giving up being stressed about being in pain plus just being in pain and maybe if I felt less pain I could adapt to groggy if I gave it a chance. OKAY GEEZ.

2. Physical Therapy. See above. Knee jerk. He said go for your back. You back is straightforward, there are things to do, it shouldn’t be like the other parts of you as much. I re-start PT on Tuesday, with immense resentment and trepidation, but I’ll try it. My back hurts, man.

3. Psychological Therapy. He looks at me. I say, “I am SO doing that, I am. Every Monday.” He asked if she was prescribing. No, I said, she thinks I should get some medical pot. So tied into 1 and 3, he is starting me on Cymbalta both for depression and because it is FDA approved for chronic pain.

4. Sleep Therapy. Good bye, Xanax. We both know it’s not really good for me. He argues that there is a lot of information that Ambien is safer. Fucking Ambien. I asked if I should read all the literature or just be ignorant. He shrugged. It’s not good to combine with booze, he pointed out, so stop taking the wine to bed with you. Don’t take it with the muscle relaxer, take one or the other.

Naturally, Walgreens managed to lose the script that I took them for the Baclofen, so I was only able to pick up the Cymbalta and the Ambien. I’m not sure how it is that I put an 8.5 x 11″ piece of paper in a vacuum tube and a guy took it out at Walgreens and now it’s lost, but there you go.

It required a dog in bed with me and strict planning to even go through with taking the Ambien, I am so afraid of it. I slept, but weirdly. I feel like I was fighting back all night, but I am also telling myself I just made a major changed by dropping out 2/3 of my alcohol consumption and the Xanax, which is how it’s been, well, for years with the booze and almost 6 months with the Xanax. So, I have to give it a chance. Two weeks. That’s what I’m going to try. It feels a little like going down the rabbit hole but I guess I can always climb back up if this doesn’t work. At this point, though, I feel like things are not working and I have to try something different. Sucking it up is too hard and costing me too much mentally and physically.

But I am completely freaked out about it. Can’t seem to overcome my brain’s position on that.

My second grandchild was born a week ago yesterday, and her mother’s labor and birth could not have been better. My daughter, who was born in sorrow and trauma delivered in control and joy and it helps to heal the wound in me from when she was born. At that time, no one I knew talked of PTSD as a result of a traumatic birth experience. I recall my dad speaking scathingly, furiously, of “that one feminist that thinks EVEN BIRTH is rape.” Part of what happens in many birth processes when attended by male physicians (and women who subscribe to patriarchal notions and underlying hatred and disgust with the female body) is a violation and does result in long-lasting trauma. For a long time I would imagine going to the address listed on my daughter’s birth certificate for the doctor who delivered her, knocking on the door and then killing him.

Some of that was healed with the birth of my third child, where I was in control and was attended by a loving partner and a midwife who did not subscribe to the traditional violence of episiotomy and domination and instead supported the process. I breastfed that child until he was three and a half and that greatly healed the damage done to me and my daughter when she was born. It was further healed by seeing her go through the birth process with total agency and belief in herself, her body and her partner. She is strong, despite a weak beginning, and her daughters are strong because of her.

The unfortunate ripple was that the baby developed a high bilirubin count and was suddenly whisked to the NICU at about a day old, and that really triggered memories of my experience with my daughter. I wasn’t allowed to hold her for the first two weeks of her life. I experienced every single possible roadblock to nursing her and was finally manipulated into giving it up when she came home from the hospital. Her father walked out on us within days of her coming home. I didn’t bond with her until she was a year and a half old, and was tortured that entire year and a half that I was a bad person and flawed mother, a judgement I passed on myself that greatly harmed our relationship for years.

My daughter’s experience was not mine. She received support and accommodation from the NICU, her partner, the physicians and her family. It was hard for me to remember that she was not having my experience and that I did not need to react to her experience through mine, but to also be able to empathize that yes, I knew exactly what it was like to see your baby with IVs and tubes and monitors and to feel helpless and afraid.

As The Shrink reminded me today, with PTSD, events that take one back to the trauma are triggering, and set you up for further destabilization. So some of my other feelings this week make more sense, given that I was triggered by the events around the grandbaby and also, the shooting in California stirring up my PTSD from the murder of my best friend and her daughter by her husband. The next step, hopefully, will be to catch on *before* I react. Because sometimes I don’t know why I am lashing out or angry or even what it is that I want–and that’s the place that the PTSD takes me. I am very sensitive, empathic, and sometimes unable to distance myself enough from things outside of my control. So we will be working on that.

Meanwhile, the baby came home today and with any luck, this will have been a tiny ripple instead of a tsunami. Fingers crossed.